FAMILY MEMBER/PARTNERS SUPPORT THREAD

[[de...]]

Thanks for saying hi, EricMX!  Yeah, feel like I'm the only family member online here, but I know there are others around, even if they don't bother posting to this thread. 

 

Anyway, welcome, and there's a lot to absorb, so if you ever need pointers on where to look, feel free to holler anytime.  When I first got here, one particular BB showed up like an angel to help me get started, and I'm still grateful for her just being around.  I'm sure you'll get lots of support as well.  I just hope your son realizes soon that you're trying to help him. 

 

And thank you for thinking of my Mum. 

[[Er...]]

You're welcome.  Thanks for the nice greeting.

[[Mr...]]

Nobody ever comes to this thread anyway, so I think I'll just use it right now like my personal blog, so I can unload, so I can hopefully move on from this very difficult spot. 

 

Where are my misery cohorts?  What, no family members?  Why not?!

delta,

When I come back to check on this site, my hope is always that the quiet is due to progress and healing.  I'm sure some of that is the case.  But still, I know there is continuous suffering.  Many of your comments from the complete post are totally relatable. You begin to wonder where the bottom is, how long must the pain go on.  You aren't wrong to want to voice your frustration with an industry sworn to "do no harm" but dolls out devastation daily.  It is a test of every fiber of your being.  Nothing you or your Mom has ever done has brought you to this point.  Victims are created as we speak, but know that healing happens too.  I don't know if you have any medical supervision in your Mom's maintenance, but up dosing to gain a little strength and relief may give you a lift to carry on.  Many on here don't support up dosing or reinstatement, but every recovery is unique and every effort to provide relief and comfort counts for something. 

As for venting on this forum, why not?  At least the people who read it can relate, and if they have the strength, perhaps respond with the type of words you need to hear.  Keep up the fight for hope.  Keep on looking for answers. 

Mr. P 

[[de...]]

Mr. P!  You came back!  Thank you for the post!  I find your words very helpful, as I did before as well. 

 

We are working with a kind new doctor now, definitely more knowledgeable than any we had encountered previously, but he is aware, as I also am, that benzo withdrawal can be different for everyone, so that there are no real "rules" to follow to get to definitive and quick relief, and really up to trial and error each step of the way.  Frustrating to no end because each time I make an "error," it's my mother who suffers more. 

 

But right, as you rightly point out, "every recovery is unique and every effort to provide relief and comfort counts for something."  Thank you for saying that.  I am indeed considering updosing now.  I think we should definitely hold, but the question right now being whether to hold at current dose or updose slightly and then hold. 

 

After studying my mother's log intensively and reading here lots as well the last few days, I'm inclined to updose her Xanax by 0.1mg, which would be a 10% increase in her Xanax (and 7% increase overall in her benzo, because we're partially crossed over to Valium, for total benzo at 28mg Valium equivalent).  Because she's still suffering so very much. 

 

But how is Mrs. P doing?  How are you? 

 

And EricMX, if you're still here, how are things with you and your son? 

 

 

[[Mr...]]

Mr. P!  You came back!  Thank you for the post!  I find your words very helpful, as I did before as well. 

 

We are working with a kind new doctor now, definitely more knowledgeable than any we had encountered previously, but he is aware, as I also am, that benzo withdrawal can be different for everyone, so that there are no real "rules" to follow to get to definitive and quick relief, and really up to trial and error each step of the way.  Frustrating to no end because each time I make an "error," it's my mother who suffers more. 

 

But right, as you rightly point out, "every recovery is unique and every effort to provide relief and comfort counts for something."  Thank you for saying that.  I am indeed considering updosing now.  I think we should definitely hold, but the question right now being whether to hold at current dose or updose slightly and then hold. 

 

After studying my mother's log intensively and reading here lots as well the last few days, I'm inclined to updose her Xanax by 0.1mg, which would be a 10% increase in her Xanax (and 7% increase overall in her benzo, because we're partially crossed over to Valium, for total benzo at 28mg Valium equivalent).  Because she's still suffering so very much. 

 

But how is Mrs. P doing?  How are you? 

 

And EricMX, if you're still here, how are things with you and your son?

delta,

It looks like some activity on the forum of late.  Your efforts to rejuvenate the thread are timely, it seems.  Glad to hear you have a Dr. that may be more open to varying the approach to benzo withdrawal.  They are few and far between.  The question about whether to up-dose or not is a unique one.  As I mentioned before, some aren't supportive of any kind of increase while others have had a different experience.  Reinstatement, what I would regard as a pretty substantial up-dose, was what it took for my wife's recovery.  Everyone's tolerance for pain or anxiety is different.  Clearly, your Mom must be on a sort of plateau.  It's difficult to say how long she may stay there.  With other drugs in the mix, side effects can range widely.  It seems unlikely that the addition of valium to her regimen would cause discomfort, so withdrawal from the original benzo has to be the source of the symptoms, in my totally unprofessional opinion. Let that logic shed some insight into your next steps.

Mrs. P is doing well, able to deal with other health issues more directly.  A major contributor to her long term recovery, we feel, is attributed to breast implant disease.  Toxicity of any type is a challenge to the bodies defenses, and foreign materials introduced into a person's body will result in natural consequences. Even after removal, there is a lot the immune system has to deal with.  Much denial from the medical community on this front, but that would be expected. Not to be indelicate, but this wouldn't be a contributor to your Mom's difficulties would it? 

One last thing.  Expecting a quick result for your Mom may not be realistic.  For some, recovery can be brief.  For others, the time frame can be protracted.  It is a struggle of many little victories, one after the other. 

Remember to take care of yourself.

Mr. P

[[de...]]

Mr. P,

 

Reinstating or updosing, I'm very glad you were able to find that venue to move toward Mrs. P's recovery.  I think updosing is absolutely necessary when symptoms are unbearable.  Not that the updose will relieve all symptoms, but to at least somewhat remedy cuts that were too fast or too much.  I also think updosing or reinstating can become trickier the farther out you go from the problematic cut or c/t, perhaps because the CNS by then has been so destabilized that any change, even an updose, could prove further "stimulating" for the traumatized CNS. 

 

I agree entirely with you that the "withdrawal from the original benzo has to be the source of the symptoms" -- thank you for that insight, and for the record, I'd value your "unprofessional" experience any day over so-called "professional" opinions. 

 

I am currently leafing through Medication Madness, by Dr. Peter Breggin.  I can't bring myself to read it straight from beginning to end because it's too frustrating.  Not the book, the book is very good, as is Dr. Breggin, and I'd like to read all of his books at some point, in fact wish I had known about them before.  The truth about drug companies, the FDA, and doctors, that is what infuriates me.  I knew vaguely already, but having it spelled out, with details, makes me wonder if only sociopaths are at the heads of drug companies, or at the heads of all large corporations, because how could they all be so cavalier about human life and hell-bent on feeding their greed only?  It is simply incomprehensible to me. 

 

But, anyway, as of now, I have scrapped the idea of updosing Xanax.  I believe there's a chance that adding back some Xanax could help my mother's symptoms, because it was indeed the Xanax cuts that caused or exacerbated them, but not knowing where her CNS is in terms of "recovery," we can't know how her system would react to the added Xanax.  So rather than risking more of the toxic stuff, I am opting to hold the current Xanax dose, to just give her CNS more time to adjust to the Xanax cuts.  And actually, I've instead slightly reduced the Valium, not to taper it, but to adjust the dose because the depression side/adverse effect from it is close to debilitating. 

 

It's great to hear that Mrs. P is doing well, though I am so sorry that her recovery's been complicated by breast implant disease.  How horrifying, and yes, toxicity of any type -- whether drugs or implants, all foreign materials after all -- would compromise the body's defenses and normal functions.  I've come to loathe humanity's arrogant messing with the human body, of which we know so little still, the mysteries of its workings and the wonders of its mind/brain being far beyond our comprehension yet. 

 

Fortunately, Mom is not dealing with such an assault on her immune system, but she certainly wasn't spared other complications, all drug-induced as well, before the benzo problem came into focus, which, once again, we had to figure out ourselves without enlightened doctors. 

 

I don't know how you made it through caring for Mrs. P on your own.  I'm doing so with my father and still finding it so exhausting and trying that I struggle to get my brain to work, so I can manage her meds, plan the next step, figure out what's been going on, even write this post.  Every day is a fight to survive. 

 

"It is a struggle of many little victories, one after the other."  You are right, and thank you for putting those words down for me to read. 

[[Mr...]]

Mr. P,

I am currently leafing through Medication Madness, by Dr. Peter Breggin.  I can't bring myself to read it straight from beginning to end because it's too frustrating.  Not the book, the book is very good, as is Dr. Breggin, and I'd like to read all of his books at some point, in fact wish I had known about them before.  The truth about drug companies, the FDA, and doctors, that is what infuriates me.  I knew vaguely already, but having it spelled out, with details, makes me wonder if only sociopaths are at the heads of drug companies, or at the heads of all large corporations, because how could they all be so cavalier about human life and hell-bent on feeding their greed only?  It is simply incomprehensible to me. 

 

delta1,

It is a cold, hard dose of reality to finally come to accept the rampant disregard so many in the medical industry have for that Hippocratic dictum "do no harm".  Is it willful?  In some cases, yes.  Is it greed based?  In some cases, yes.  Is it because so many in the health industry have been relentlessly indoctrinated since the 1920's? Categorically,yes.  I have long maintained that any medical professional should suffer the symptoms of their patients, however that could be achieved, in order to realistically treat them. Certainly, this isn't very doable, but the cluelessness of some caregivers is maddening. There are many practitioners who genuinely feel they are doing the right thing, but that is in an environment of compromised resources, too high expectations, and the desire to find an "easy" way to wellness.  The business model of western medicine supports  treating the symptom, not finding the cure.  Of course, none of this comes as a surprise to the folks here, and I don't mean to sound sanctimonious, but at the end of the day, this "business" of healthcare sucks. A physician may save my life today, and I will naturally be forever grateful, but to date, those I love have been more personally harmed than helped. Keep reading, keep educating yourself, and remember to be there for your Dad, as well as caring for yourself. 

Mr. P

 

[[de...]]

Mr. P,

 

I agree with everything you said.  I think of physicians who save lives to be the ones in emergency situations, patching up physical injuries, operating to stem internal bleeding, and the like.  The rest of "healthcare," as in ongoing maintenance or "preventive" healthcare of whatever with prescription drugs and such, I have seen more harm than benefit from it, and ultimately have little faith in or respect for it. 

 

Anyway, thank you for the reminders and encouragement.  I am sifting through more of Dr. Breggin's books, and feel like I'm finally figuring some things out and understanding better than before.  And it only took about 7 months! 

 

We started our taper 7 months ago, and we've stalled so many times because my mother's w/d symptoms have been so bad that we've not made much progress.  Had I better understood what was going on and what to do, my mother may not have suffered so much, for so long now.  Finally, now that I think I'm getting a better grip on this matter, maybe I can change that. 

 

Could I ask how long you waited after reinstating or substantially updosing K to proceed to tapering?  I know it took 19 months for Mrs. P to taper completely off, but I'm not sure that includes the updosing time.  Just wondering how long it took her to "stabilize" after updosing.  More food for thought. 

[[Mr...]]

Mr. P,

Could I ask how long you waited after reinstating or substantially updosing K to proceed to tapering?  I know it took 19 months for Mrs. P to taper completely off, but I'm not sure that includes the updosing time.  Just wondering how long it took her to "stabilize" after updosing.  More food for thought.

delta,

I  would say we waited about a year before starting the titration process.  Mrs. P was severely psychotic from withdrawal for about 7 months after the recommended 6 week taper, losing down to about 110 lbs.  She was reinstated after an enforced hospital stay. There was a lot to recover from.  Also, during this time, we had all of her mercury based fillings replaced with composite crowns.  It took a while to find a dentist knowledgeable enough to do it safely.  We began to see improvements in her physical health within about a month of their removal.  As I have said, recovery from this drug damage is long term.  Just remember, eventually it can be behind you.

Mr. P 

[[de...]]

Mr. P,

 

That is a lot of toxicity Mrs. P (and you) dealt with, the mercury, the implants, the benzo, and amazing how much you've achieved by making it through all that.  You and the Mrs. have all my admiration for how strong you both are, and Mrs. P gets my warmest regards, and you my kindest regards 

 

Thank you for sharing your story.  I know a little more now to not be impatient, to go as slow as necessary.  I've reconsidered things (will I ever figure this out for good?!) and will be updosing the Xanax for my mother.  Have been almost paralyzed by how toxic that stuff is but having suffered so much from reducing it so rapidly back around November, and holding yet to yield much relief, it's the option that emerged as most sane under the circumstances.  Will be "titrating" up gradually, rather than adding in a chunk at once.  Scared to death it won't work, that we'll be truly lost if it doesn't help. 

 

Anyway, again, thank you for all your encouraging words, and my regards to you and Mrs. P.

[[Mr...]]

Mr. P,

 

That is a lot of toxicity Mrs. P (and you) dealt with, the mercury, the implants, the benzo, and amazing how much you've achieved by making it through all that.  You and the Mrs. have all my admiration for how strong you both are, and Mrs. P gets my warmest regards, and you my kindest regards 

 

Thank you for sharing your story.  I know a little more now to not be impatient, to go as slow as necessary.  I've reconsidered things (will I ever figure this out for good?!) and will be updosing the Xanax for my mother.  Have been almost paralyzed by how toxic that stuff is but having suffered so much from reducing it so rapidly back around November, and holding yet to yield much relief, it's the option that emerged as most sane under the circumstances.  Will be "titrating" up gradually, rather than adding in a chunk at once.  Scared to death it won't work, that we'll be truly lost if it doesn't help. 

 

Anyway, again, thank you for all your encouraging words, and my regards to you and Mrs. P.

delta1,

Be assured the up dose will have an effect.  It is a powerful substance that changes the function of the brain and increasing the dose will likely alleviate some of the symptoms. Titrating upward is probably wise, as your Mom appears to be susceptible to subtle changes.  By that same token, it may prove easier to see when the relief starts to take hold, so you can moderate the process more precisely and not increase more than necessary.  One of the greatest struggles I faced as a caregiver was the uncertainty.  I was never sure if what I was doing was the right/best/least dangerous path to follow.  Thankfully, Mrs. P was able to gauge her progress well, and make changes accordingly.  Her detox continues to this day, but the good days far outnumber the bad.  Good health is a precious thing, and when it is lost there is nothing to replace it with.  Look to your own health as well as those you love and care for.

Mr. P 

[[de...]]

Mr. P, I'm truly grateful for your wise and kind support.  Your post arrived just in time; I had been feeling unsure, yet again, if I should titrate up as I'd planned, or jump up in one go.  It's incredibly hard to be patient when I see her suffering right in front of me -- in addition to constantly questioning, never knowing, if I'm doing the right/best/least dangerous thing, as you said. 

 

But you're right; my mother is exquisitely sensitive to dose changes -- the result of all kinds of complications, not really toxicity as in your wife's case, but certainly including a brutal cold-turkey off an AD and then ill-informed/indiscriminate resort to Xanax.  So probably better to go slow, even with updosing, to moderate the process as precisely as possible, not add more Xanax than absolutely necessary. 

 

I'm very glad to hear Mrs. P is having more good days than bad, and quite so, without good health, we have nothing.  I appreciate your advice to look after my own health too, but you know, it's hard to give it much thought, almost feel guilty, with my mother in such agony.  Right now I can't function without coffee, which further tax my adrenals so I shouldn't drink, but it's not the oh-I-feel-tired-and-blah thing, rather that I can't process thinking if I don't drink that black liquid.  I know your own health suffered, losing 20 lbs. if I recall, while caring for your wife.  I hope you've recovered also and are doing well. 

[[Ma...]]

Mr. P, I'm truly grateful for your wise and kind support.  Your post arrived just in time; I had been feeling unsure, yet again, if I should titrate up as I'd planned, or jump up in one go.  It's incredibly hard to be patient when I see her suffering right in front of me -- in addition to constantly questioning, never knowing, if I'm doing the right/best/least dangerous thing, as you said. 

 

But you're right; my mother is exquisitely sensitive to dose changes -- the result of all kinds of complications, not really toxicity as in your wife's case, but certainly including a brutal cold-turkey off an AD and then ill-informed/indiscriminate resort to Xanax.  So probably better to go slow, even with updosing, to moderate the process as precisely as possible, not add more Xanax than absolutely necessary. 

 

I'm very glad to hear Mrs. P is having more good days than bad, and quite so, without good health, we have nothing.  I appreciate your advice to look after my own health too, but you know, it's hard to give it much thought, almost feel guilty, with my mother in such agony.  Right now I can't function without coffee, which further tax my adrenals so I shouldn't drink, but it's not the oh-I-feel-tired-and-blah thing, rather that I can't process thinking if I don't drink that black liquid.  I know your own health suffered, losing 20 lbs. if I recall, while caring for your wife.  I hope you've recovered also and are doing well.

 

 

That was an incredible post to read by both you Delta and Mr. P.  That will help so many people struggling today.  Thank you for taking the time to write it.

[[de...]]

Mary, you really are the biggest sweetheart, thank you for visiting this thread, and hope you're doing all right today. 

[[Aj...]]

You are all amazing for the level of care you are giving to your loved ones!

 

Please remember to look after yourselves. You have no idea how special you are.

[[de...]]

Ajusta, thank you so much for such kind words, helps, really does, even if I still feel useless.  I know you guys are suffering something horrible, but it really is another hell to watch without being able to do anything to ease that suffering.  I just hope to hear soon that you're getting better, especially your touch sensitivity/distortion. 

[[Wi...]]

Hi. I am very new to this site and feeling so overwhelmed by this whole process.  My husband was only on Xanax for about a month before he started having inter-dose withdrawals.  He cut the xanax very quickly and moved to Valium through a psychiatrist.  He doesn't want to take any additional meds and is just not doing well at all.  He started the Xanax in March of this year.  Started Valium (.5) in April.  His symptoms are horrific. It is so painful to see him going through this and feeling so helpless to watch as there is nothing I can do to ease his pain.  He's not sleeping, having many panic attacks during the day and night. Pacing and moaning.  He's down to under 140 lbs (6 foot 1).  His latest symptom/side effect is a patchy tongue.  Making it more difficult to get him to eat.

 

I feel like the only thing I feel like I can do is to try to get him to eat healthy foods. I feel like a nag, always trying to get him to eat.  I am making him smoothies with as many calories as I can fit in while still being healthy.

 

Does the fact that he's a short term user make any difference in the withdrawal process?  BTW, his doctor doesn't believe that he is, in fact, experiencing withdrawal symptoms since he is still on the drugs.  (currently still looking for a benzo wise doctor, but it's not easy).  The meds the doctor wants to add have very scary side effects and my husband doesn't want to take anything else that he will have to detox from in addition to the Valium.

 

I am so afraid (so is he).  He does not want to go to the hospital for fear that they will do a quick detox with all sorts of meds but I'm afraid that he is deteriorating.

 

Sorry if I'm a little disjointed here.  There is really no one to talk to about this unless they have experienced it. 

 

My heart goes out to all of you supporting loved ones.  It is so difficult for them to go through this, and heartbreaking for us to watch them <3

[[Mr...]]

Does the fact that he's a short term user make any difference in the withdrawal process?  BTW, his doctor doesn't believe that he is, in fact, experiencing withdrawal symptoms since he is still on the drugs.  (currently still looking for a benzo wise doctor, but it's not easy).  The meds the doctor wants to add have very scary side effects and my husband doesn't want to take anything else that he will have to detox from in addition to the Valium.

 

e]

Dear WifeSupport,

The statements above show clearly that a new doctor is essential to helping your husband.  Psychotropic drugs affect people in widely varying degrees.  Your doctor has implied his "belief" is more relevant than your husband's symptoms.  That is a very red flag.  It also is likely the doctor in question doesn't understand equivalent dosages when transitioning from one drug to another.  Research the Ashton Manual and keep looking for a practitioner who believes in his/her patients and doesn't lean on their arrogance to pass them off as knowledgeable.  We are conditioned to trust these people, and they are conditioned to believe they're mistakes are inconsequential.  An uninformed md nearly killed my wife by his condescending self confidence. Harsh, I'll admit, but founded solidly in personal experience.  The length of time someone is prescribed a drug isn't necessarily an indicator of the overall effects.  Continue to ask for help here.  There are many that can provide the guidance you and your husband are going to need.  Ultimately, however, you will both be ok.  It is a journey. 

Mr. P

[[de...]]

WS,

 

Mr. Potato is exactly right.  The length of time one takes these drugs, even the amount, doesn't seem to correlate to how bad the withdrawal symptoms are, unfortunately.  And I would most definitely believe that your husband is dealing with withdrawal symptoms, which can arise even when still on these drugs.  I'm sorry you and your husband are struggling, and I've no doubt the situation is horrific as you've said. 

 

Your husband not wanting to take any additional meds, that is a very good instinct and will prove more useful than any "medical expertise."  So regardless of what any "doctor" says, please go by how your husband is doing, and it would indeed be best to look for another doctor until you find one who at least listens to what you have to say, so that you can use this doctor at the least to get the necessary prescriptions/refills until your husband can stop taking the Valium. 

 

For some immediate relief, if possible, it'd be helpful to know what dose of Xanax he was taking to begin with, because as Mr. P said, the 0.5mg Valium may not be equivalent, so not enough to help your husband's symptoms.  According to the Ashton Manual, 0.5 Valium would be equivalent to about 0.025mg Xanax, which I'm guessing is less than what your husband took? 

 

We all know how absolutely impossible this feels, whether it's Mr. and Mrs. P who have gone through it already or others who are still in the middle of this nightmare.  Keep researching, ask questions, and know that we're here for you. 

[[Ca...]]

Hi Guys...

Some Great advice here... -a pleasure to read...!!

Sadly a horrid situation though...

 

Just wanted to say, I believe there IS a way off these meds for everyone, so never give up hope...

And my best to everyone as they help navigate their loved ones through this...

What a huge gift of love you are giving...

 

 

[[be...]]

Hi.

 

Has anyone found that healing is really hard with a struggling relationship ?

The struggling relationship adds a lot of exterior stress to an already very hard healing. 

 

Any advice that people have found to helps ?

 

Thanks and look forward to your responses !

 

[[Ca...]]

Ohhhh YES..!!

-and I can escape, as we dont live together...

 

Constant Stress and Anxiety is not a good healing environment for our CNS...

 

So hard, but at some point we have to put ourselves and our taper first, or risk remaining like this forever...

 

If you can get the "time out" that you need, it may help alot...

 

Sorry you are dealing with this too...

 

Oh, and I think our sensitivity and emotions get a bit hightened too...

 

[[Mr...]]

Hi.

 

Has anyone found that healing is really hard with a struggling relationship ?

The struggling relationship adds a lot of exterior stress to an already very hard healing. 

 

Any advice that people have found to helps ?

 

Thanks and look forward to your responses !

benzohelp,

There are very few things that will stress a relationship more than a benzo recovery.  It is really essential that you try to help your partner see that whatever issues you may have otherwise, your benzo withdrawal is a separate thing and it will take time.  This is not to say the side effects won't exacerbate the other things going on, but it will be helpful if your SO can begin to keep the two apart.  If the recovery is the reason for the problems, then you must know that as healing progresses, the troubles will begin to lessen.  I know it sounds daunting to have to assume this communication responsibility on top of everything else, but if you can it could save the relationship.  Hang in there.

Your signature doesn't inform us of your status in recovery/struggle, so some information there would help others in assisting.   

Mr. P

 

[[fr...]]

Hi friends - just posting an update.  I cannot say that everything will always be “fine” (or more) forever, but I can say this:  things are so much better today than they were 4 years ago, 6 years ago -

 

It is easy to forget the depths of horrified despair into which I’d fallen.  Maybe that type of whitewashing is a form of self protection, as there were days/weeks/months when I wasn’t sure how I was going to get self or children - much less suffering spouse - through the following one.  But what I do remember is how I would cling to words of hope from others on here, even though I rarely posted.  So offering just a few. 

 

I know that every one is different, every circumstance unique.  But I was certain that the issues that plagued my spouse would never resolve, and so was he.  That said:  no more inexplicable burning in torso, stomach; no more strange sensations across skin or as though blood vessels were popping.  No more peculiar, numb spot on roof of mouth, or tinny metallic flavor.  Sense of taste & smell has returned.  Air hunger a non-issue, racing heart, too.  Anhedonia, flat affect gone.  Feeling that organs were corroding a distant memory.  So many trips (eg Mayo), so many tests.  Most on here counseled time - although I don’t know for sure, that seems to have been the key; if there was a different driver (except perhaps for hope and the slow cessation of fear that intermittently joined/was caused by/occasioned it), I’m unaware.  Spouse back to things he loves: music I can’t appreciate, golf

(that either),  his family, his job.  Whatever normal even is, it feels like it has returned, and perhaps with a heightened appreciation for recognizing the moment and how quickly switches can flip.

 

So many on here helped whether they ever knew it or not.  If you ever posted, don’t believe for a moment that the things that you wrote (no matter the content - even scary postings can make others feel less alone) weren’t read, and appreciated, and maybe even life-saving.  Thank you, and to Patty Lu for creating this.  I’ve no special knowledge or wisdom.  But if I can help (even if just by “listening”), I will. 

[[Ma...]]

Hi friends - just posting an update.  I cannot say that everything will always be “fine” (or more) forever, but I can say this:  things are so much better today than they were 4 years ago, 6 years ago -

 

It is easy to forget the depths of horrified despair into which I’d fallen.  Maybe that type of whitewashing is a form of self protection, as there were days/weeks/months when I wasn’t sure how I was going to get self or children - much less suffering spouse - through the following one.  But what I do remember is how I would cling to words of hope from others on here, even though I rarely posted.  So offering just a few. 

 

I know that every one is different, every circumstance unique.  But I was certain that the issues that plagued my spouse would never resolve, and so was he.  That said:  no more inexplicable burning in torso, stomach; no more strange sensations across skin or as though blood vessels were popping.  No more peculiar, numb spot on roof of mouth, or tinny metallic flavor.  Sense of taste & smell has returned.  Air hunger a non-issue, racing heart, too.  Anhedonia, flat affect gone.  Feeling that organs were corroding a distant memory.  So many trips (eg Mayo), so many tests.  Most on here counseled time - although I don’t know for sure, that seems to have been the key; if there was a different driver (except perhaps for hope and the slow cessation of fear that intermittently joined/was caused by/occasioned it), I’m unaware.  Spouse back to things he loves: music I can’t appreciate, golf

(that either),  his family, his job.  Whatever normal even is, it feels like it has returned, and perhaps with a heightened appreciation for recognizing the moment and how quickly switches can flip.

 

So many on here helped whether they ever knew it or not.  If you ever posted, don’t believe for a moment that the things that you wrote (no matter the content - even scary postings can make others feel less alone) weren’t read, and appreciated, and maybe even life-saving.  Thank you, and to Patty Lu for creating this.  I’ve no special knowledge or wisdom.  But if I can help (even if just by “listening”), I will.

 

That was a beautiful post, so very happy for your family, and thank you for giving us hope too :smitten: